Posts Tagged ‘good days’

Like most of my days lately, it was very busy……slept in until 4:45 am, then got up to finish grading poorly written papers before the coffee was even brewed, cleaned the kitchen, made son a 3 egg cheese omelet, and then drove him into T-town for 9 am medical appointment, and back home with just enough time to rush off to work myself, worked half day, taught four classes, 86 kids, and then entered grades for two classes with moments to spare before the grade entering window slammed shut. Was done at school by 4:20, dashed off to purchase supplies for food demo and labs this week and got caught up in the 5 pm rush at the store……….only to discover the first store didn’t have all the required ingredients….. big sigh……hustle back to Perrysburg, and oh-bonus activity, got to stop by the library tovote, THEN home to make dinner, spaghetti for us, pita pizzas for kids, clean up the kitchen, head back out to second grocery store to buy the rest of supplies…..big sigh again…not enough of the whole wheat pitas there either dammit, will have to go grocery shopping AGAIN tomorrow morning BEFORE school…moderated a fight between the boys and then got the kids ice cream at the good Hershey’s Ice Cream Shop. Actually sat down for a couple of minutes to watch the local girl on American Idol. Figured out what to wear to school tomorrow. ALL THE WHILE THINKING………..gee, that whole breast removal thing that occurred a year ago today…..seems like such a big damn deal that I should recognize it somehow. Maybe even celebrate it in some way. All day, I was perplexed at the thought of how do you recognize such a wierd, life-transforming event as a mastectomy? Find something you love and cut it off?

Only now have I realized that I did celebrate that stupid mastectomy. by living. by still being here for my kids (as imperfect a parent as I am….) still being a teacher. still moving on this planet.

stupid cancer hasn’t killed me yet. chemotherapy and radiation, survived both of them, too. They all really suck, and I’m going to some day get beyond this phase of life of daily incredulous rediscovery of…..my life with stupid cancer.

But on the bright side, it could be so, so much worse. I am grateful for all the gifts I’ve been given…even crappy ones, for each experience, if it doesn’t kill me, makes me stronger.

Well today I took a big step in reclaiming my old life. I stopped by school to talk to my principal and long term substitute teacher about my “return to work” plan. It was a good day to do this, too, as it was one of the “cook-out” potlucks organized by our amazing and wonderful staff, so everyone came to the lunchroom. I had the opportunity to at least say hello and show off my new stubbly hairdo.

What a nice group of people I work with. I received a lot of great big hugs, well wishes, and even some lovely gifts (jewlery!!) I am a little bit apprehensive about returning to a full work day, but I couldn’t possibly ask for a better place, or better people to work with. So here is the plan: I have been released for part-time work for 2 weeks, and after that, I think it is my call, but I plan to be working full time by the middle of October. The way I plan to organize the “part time” plan is to work for three days in a row beginning on Tuesday. There might be easier ways to work 24 hours in one week, but I think this is better for the students. At least I hope it is…

Now, of course, I haven’t started my “radiation” yet. I am still waiting for “the call” which will tell me when I start the treatment and what time of day. I sure hope they got the message that as a teacher, I can only do this after 3:30 pm, otherwise it will ruin my carefully laid out plans. Of course, I know that at the Cancer Center, they have lots of other priorities other than my wishes to plan around…

I’m keeping my fingers and toes crossed that I hear something tomorrow (Friday) so I don’t have to endure the weekend still with all this uncertainty.

Wow-lucky me- Sunday was another good day! Got to go to church, see all my friends…..nothing quite like going to a place where not only does everybody know your name, but they are all like really nice big brothers and sisters and moms and dads. Some of them are like quirky neighbors, and others are just like best friends. Truth is, I really have only known them all for less than two years, and only know them from church*, but I know their interest and care is sincere. Again….lucky me.

Then on Sunday afternoon, I still felt great so I went to the Levis Commons Art Fair and got to do one of my favorite things….buy “Artist Jewlery”. I found a sweet little set of a silver necklace and earrings created by a Michigan woman and her dad…..I tried to take a picture of them to place here, but I’m no professional photographer…the necklace says “give thanks”. It truly represents how I mostly feel, even if you think I sound kind of “whiny” from time to time.

Today……well, today was a whopper of a day! I was up in the middle of the night with an anxious and sleepless child (school anxieties) so I can’t believe how much I accomplished with the help of my friends. Especially MarvelousMarilyn (MM). Let me tell you about MM. She has volunteered herself as my monday morning helper around the house, which mostly means “maid work in the kitchen”. But MM has really been a great inspiration for me, has kept my spirits up when I have been dragging, vigorously wiped down my kitchen counters (still kind of difficult for me to do), helped clean out a neglected refrigerator, vacuumed, vacuumed, vacuumed Yellow Lab Dog Hair, folded laundry, talked to boys, etc. etc. etc. Today MM helped me clean up the “student center” in the house which is where all the kids school work, legos, and miscellaneous crap lands, and where their beloved computers reside. Well, this area has been a DISASTER for….months, and I have been feeling bad about that. Not a good enough housekeeper to even get the kids school work from LAST SCHOOL YEAR saved or filed away or thrown out or whatever you are supposed to do with the volumes of paper two kids bring home from elementary school. Well, today MM helped me in A BIG WAY get it pretty much whipped into shape, and looking good. Still a bit to do yet, but I feel like I can get the rest of it now. Even if I had done nothing else today, it would have been a great day because of this accomplishment. Thanks Marilyn, you are a marvelous friend and like a mom I wish I had.

THEN, after lunch, I took the boys to their new daily afterschool childcare, to get to know the family, the toys, the other kids, etc. while I had a couple of appointments. I am keeping my fingers crossed that it works out for all involved. Like..all of my fingers crossed and toes crossed, too, because right now, I don’t have a back-up plan for afterschool child care, and even though I’m not back at work yet, I will be soon (I hope) and will desparately need the assistance then. So far, the boys have said it was “OK” which is a good sign.

SUPER LUCKY ME, had an appointment at The Victory Center** with Tom. I’ll tell you, we are so lucky here in NW Ohio to have TVC and receive the benefits of the adjuvant therapies offered. You know things are good when you begin to feel better just walking into a therapist’s room. Tom practices Reiki and Sound Therapy and it is the best I feel all week when I am in his care. It is so difficult to explain, but for me, it provides such a deep sense of peace and relaxation which permits your mind and body to just experience the flow of energy on a completely pure level. You must be willling to release conscious thought to truly receive the benefits. Again, I can only say what it gives me, but it is a colorful, relaxing, yet at the same time energetic experience. And no two sessions are exactly alike. And I always feel just great when I am done. Thanks Tom, I love the work you do.

AND AS IF THAT WASN’T ENOUGH, MY NEXT APPOINTMENT WAS WITH THE DENTIST! Now you might think I am being kind of sarcastic here, but nooooo, I actually like going to the dentist. First of all, at MY dentist’s office, everyone is really nice and the hygenists never scold you for not flossing well enough. Secondly, they have really nice chairs. Thirdly, Dr. Urbanik is friendly, sincere, and has really small hands. Or at least I think he does. I never actually look at his hands when I can see them, but I am always impressed that when he has his hands in my mouth he doesn’t make me gag. The last time I was there was just days before my cancer trip began, so I filled them in on my busy Spring and Summer. Did you know that one of the potential side effects of chemotherapy is open sores in the mucous membranes of your mouth? Again, lucky for me, I havn’t had that problem. Dr. U was impressed, said nice things about my mouth. While there I mentioned that I might be participating in a clinical trial at U of M, the Bisphosphinate Study and might need his office to send dental records. He surprised me by mentioning we need to talk about that further, and perhaps even complete a more in depth examination. He briefly explained how the mandible (and to a lesser extent the maxilla) process bone, and how the drug in this trial will move through bone, especially the jaw bones which then brings up a concern for the future integrity of those bones. Hmmmnnnn. Great that my Dentist actually knows about the study I am talking about, now I have another thing to research a bit further. In my spare time. I really am grateful to have a smart tooth guy like Dr. U.

OF COURSE MY DAY WASN’T OVER YET, after I picked up the kids at the new place, went home, made dinner for them, and then directed the boys to write their names on the school supplies that BFF Heather took the time to buy for us. That means about a million things needed names written on them. Well, we only had time after dinner to put names on half a million things and jump into the superminivan and dash off to Open House at the boys school. Charlie had asked me to wear one of the newly borrowed wigs to the school so I didn’t embarrass him, so halfway out the driveway I remembered, drove back in, grabbed the hair and off we went! (BTW Heather, I’m giving you another BIG HUG for that incredibly thoughtful act……to save me the hassle of pulling together all the school stuff!!)

OPEN HOUSE WENT WELL, boys behaved, even the incredibly anxious child, they were nice to their teachers, nice to each other, found their desks, put away their stuff, nobody got mad, nobody whined, nobody yelled. Not even me. So, it was a resounding success! And school starts in ohhhh about 32 and a half hours. But who’s counting?

THE REWARD FOR A GOOD VISIT TO SCHOOL was a stop to see Bill’s chickens before we went home. The kids had fun feeding them yummy weeds, and chicken delicacies, beetles and worms. I got to help pick tomatoes and drink a beer. The weather was perfect. The sky was beautiful.

Arrived home late, Lou went out for Chinese food, so thankfully I didn’t have to make dinner. We all ate together like a family should…again with no whining and no yelling.

*Maumee Valley United Univeralist Church website is: http://mvuuc.org/ check out the calendar…if it sounds like something you are interested in, please come. Anyone of any faith is welcome!

**I know I have mentioned this before, but it is worth mentioning again…if you know anyone diagnosed with cancer in NW Ohio, you must refer them to The Victory Center. All services are free for cancer patients. This organization is worthy of your support…..your passing their information along and/or passing a check their way. Check them out: http://www.thevictorycenter.org/

Last night Lou and I saw the movie Julie and Julia. It was great, especially Meryl Streep’s portrayal of Julia Child. Wow! WOW!WOW!!! And all the food………..ohhh my goodness. I loved it, loved it, loved it!! When I woke up this morning, I couldn’t stop thinking about the food. And then I realized just how much, how terribly much I miss “the food”. I think one of the things I have missed the most this summer is not being able to COOK. Oh, I can kinda’ cook. I can make a basic dinner with convenience foods and a few fresh ingredients. I have enough stamina to make it through the grocery store, and get the food into the house. I have enough strength now to be able to get the Caphalon pans off the rack and onto the stove. But I have discovered, I must keep it all very simple, or else I run out of steam before the dish is done. I can’t even tell you how many beautiful bunches of basil have been denied the opportunity to become a perfect pesto because they wilted into oblivion in my fridge before I had the opportunity and energy to put the simple recipe together. And the swiss chard, especially the rainbow chard…sighhhh…I just felt so so bad, and so sad to throw several bunches out over the last couple months. Beautiful rainbow chard gone to waste is a terrible thing. I have started with great intentions, and think a recipe through carefully, plan around what I anticipate will be “my good days” purchase the ingredients ahead of time, and somehow it frequently hasn’t happened, but certainly not for lack of desire or will.

I also miss strength and stamina. Just pulling four dinner plates out of the cupboard takes effort. Actually I can’t even do that, it’s more like two at a time, and even that is not all that easy. Closing the back door of the minivan…that hurts, too. Even pulling weeds out of the garden requires planning, have to save that for the “good days” and all I can manage to evict then are the shallow rooted invaders. This lack of upper body strength makes me feel so oldwhen I have never felt old before. I am working really hard to continually, everyday, try to do a little more, but it seems like I take two steps forward, and then one, and sometimes two steps backwards. The lymphadema issue on my left side, that is a real thing. So, I guess I really miss those lymph nodes, too. All these years I have taken them for granted….well no more. I’m grateful for all the lymph nodes I still have left. You should love your lymph nodes and appreciate them for all they do.

I miss fearlessness. I didn’t realize until this year, how relatively fearless I have lived life. In fact, I don’t think I really experienced much fear until I had babies. When I had babies, they came with “parent fear”…if you are a parent you know what I am talking about….the fear that something, someone, some unknown factor will hurt your beautiful and perfect child. Of course, “parent fear” comes and goes with the news stories of the day or the shriek of a child….. But now….geez…cancer……somehow it invites itself into your tissues and divides uncontrollably. Then, if you are lucky like me, you find it before it reallythreatens to kill youand get it in a body part that is non-essential (sorry about that breasts), and a good surgeon can “cut it out”. But you know what they can’t cut out? That nagging fear that some how, some rouge cancer cell snuck out of the core tumor and has been hiding from the chemotherapy, is out of the line of fire of radiation, and just waiting to make a ‘comeback”. The small discomforts of normal aging now make you think with a paranoid edge. Could that nagging backache be something bad happening in my bone marrow? How many times have I had that little pain in my head….and has it been in the same spot….and maybe I should mark it with a “Sharpie’ so I can keep track of it…maybe I should make a log of the times I’ve felt it….. I don’t know how to find the balance between merely paying attention to my body and being paranoid about every little thing, little pains I feel. I don’t like it much, being paranoid.

Yesterday I made a trip to Office Max to buy one of those rolling cart things for when I do eventually return to school (hopefully by the mid to end of September) because, of course, I’ll probably not be able to actually carry stuff back and forth like before. While in the cashier line, I saw this pretty teenage girl, I kind of didn’t recognize her at first…and realized it was Emily, a quiet and thoughtful student I had in my class for two years in a row. Boy, over the summer she has grown, looks more mature. I chatted with her and her mother for a few minutes as we all walked to our cars. I put my bags in my car, got in, and surprisingly and uncontrollably burst into tears. Wow…what was that all about? I think I just miss teaching, I miss my school, I miss the camaraderie of my teacher friends and fabulous secretaries, but most of all, I miss the kids. Seeing a student really hit me right in the emotional gut, I’m not where I am supposed to be right now. I am supposed to be in the classroom, with all the ups and downs of teaching, it is all about connecting with kids, and helping them learn and grow and become more mature. And I’m missing it. Yea, I know I’ll get there, but today I’m missing it.

There’s lots of other things I miss too, like having free time. I’m sick of taking every available moment to study my treatments options, filling out medical paperwork, researching medical facilities and doctors, etc. I know that it is shallow and only temporary, but I miss my hair. In air conditioned rooms, my head is cold. With cooler temps finding their way to Ohio, my head is cold. I miss planning anything. I always have to think, well, if I am OK on that day I can….. I hate having to live one day at a time. People who tell me to just live one day at a time don’t actually have to live their life that way. It is easy to say, very hard to do. I miss taking “feeling good” for granted. I didn’t realize how most of my life I always felt good. Now, when I feel good, I really notice it and appreciate it so much.

Sigh. I’ll quit whining now. At least for today, I get to go hang out with the Unitarians. And that is something to be grateful for.

Here it is Saturday, and I have been working on this post since Tuesday. Quite a long time because I am so……confused?….no, that’s not the right word. Conflicted? No, that’s not it either. I want to be able to make an intelligent decision based upon facts and I am stuck in “emotion”. I know what my heart wants to do, but I am so concerned about making the correct decision, because well……it all comes back to desperately wanting to see my kids graduate from High School. It is so easy for others to cheerily reply…..”oh, you will!”…….and I think that might be true, but I don’tknow that. These are the “tear-jerker” thoughts I have at a moments notice.

Wow, how interesting it was to go to U of M on Tuesday and listen to a whole new version of a viable “treatment plan” for my unique cancer case. I don’t mean to make my personal pack of terrorist cells sound like they are something special or anything. (Well, they are kind of special to me, even though I intend to kill them). At University of Michigan, the Breast Care Center is quite a big place. Lots of breast cancer walks out of the elevator doors there. I felt like a sick chick suddenly opening the doors to the Cancer Land of OZ.

My experience at the Breast Care Center began with a review of my history, a brief physical examination, and Dr. H (a “resident”, I think) brought up a website called “adjuvantonline” which has statistical data to help an Oncologist discuss the “rate of recurrance” of cancer, or the “mortality rate” with your personal information plugged into the program. Then they enter data of different types of therapies and get a bar graph that demonstrates the risks/benefits of each therapy for you. I know some are skeptical of this site, but if a major medical/research facility uses it, it’s good enough for me.

OK, the whole motivation to go to U of M was to get a “port” placed in my arm for delivery of chemotherapy meds. Imagine my surprise when Oncologist/Internist Dr. Schott said, “No…you don’t need a port.” I was stunned. What I had taken as acceptable reality in Toledo was kind of “old school” at U of M. Dr. S recommends four treatments of chemo three weeks apart. Only four treatments? Yea, only four treatments. Not enough to have the inconvenience of surgically inserting a subcutaneous port. The ports make it easier for the nurses to administer the meds but also have risks of their own, as well. She assured me that the nurses at U of M are very goodat what they do, and they will be able to find a vein sufficient enough for chemo meds, and no, they won’t “collapse” my veins and yes, it will be all right, they do this all the time with women my age and older.

The most significant difference between Toledo and U of M? In Toledo, I have Stage II Carcinoma, at U of M, I have Stage I carcinoma.(**see note at end of post) Wow. Big difference. I could give more examples of differrences between the two places like, recommended behaviors, suggestions for short term planning, etc. …but the staging of the tumor? Well, that really muddies the water. I have been evaluating my records from Toledo to try to figure out what grading scale was used, U of M indicates the Scarff/Bloom/Richardson grading scale. I have read and researched, and I honestly don’t know which place is correct.

Of course the “stage” of your cancer is vitally important when determining the adjuvant therapy (nice way of saying chemo-poison and other drugs) most appropriate. Here there is a significant difference in “suggested method of treatment” (I word it that way, because the Oncologists I have met have been very careful to provide a choice, and not be too pushy about which of the two is better.) In Toledo, my Onco-man has suggested a TAC regimen. This means: Taxol, Adriamycin and Cytoxan for six treatments, three weeks apart…about 18 weeks of chemotherapy, followed by “hormone” therapy, to block estrogen and progesterone I still naturally produce (my cancer “feeds” on estrogen and progesterone.) At U of M, the suggestion has been to infuse Taxotere and Cytoxin in four treatments every three weeks….about 12 weeks of chemo, followed by “endocrine” therapy (same as hormone therapy, but a “more accurate” term). Notice U of M leaves out the Adrimycin. Funny thing about Adrimycin…it has a nasty side effect of “potential heart damage”. When Dr. S explained a potential chemo mix that included Adrimycin, it only decreases the rate of recurrence within five years by 2%. What would you pick? Take the drug with the potential of damaging your heartmuscle, or, a 2% better chance of no recurrence of cancer in the next 5 years? I have ten more years before Charlie graduates from High School. Sigh……….

Of course, that intellectual dilemma takes me back to the question of “Stage”. If truly a stage II cancer, perhaps a more aggressive approach will get me to the goal. Maybe I’ll be lucky and not have the “side effect” of heart damage. Then I think about the No 1 killer of women……of course, heart disease.

**Revision (6/15/09) I need to add an updaste to this post. From my first visit to U of M, I discovered that I misunderstood some information that was presented to me. The Pathologists at U of M did indeed list my cancer as a Stage 2 cancer. (I misunderstood information about the “grade” and “stage” of the cancer.) Once I had made a second call to the nurse practioner who assists my oncologist, she patiently explained all relevant information to me not once, but twice. This small experience goes to show you that even when you think you have fully understood everything, took notes, etc. there can still be misunderstandings. It is SO IMPORTANT to ask questions, and don’t settle for an answer you do not understand! It is your life and you deserve to be fully and completely informed!

A few weeks ago, super-nurse-angel Juli told me I would have some good days and some bad days, and then just some “days”. But yesterday, well, it was definately a GOOD DAY!

On Tuesday, we knew the Pathology report was in, but could not receive the results as the submitting physician was out of town. So the phone call from her office was just kind of a “tease”. Just enough to heighten our anxieties. Lucky for me, I have a prescription specifically for anxiety (says so, right on the bottle!) and I, of course, took advantage of that.

On Wednesday we had an appointment with Dr. Barone, the plastic surgeon. Once again he had nice things to say about my scars on my FLAT CHEST, and removed the last of my medical devices, the drainage tubes and bulbs. The interior part of the drainage tubes were probably about five inches long by 3/8 inch wide, in the lower portion of where breasts used to be, one on each side. It was such an odd sensation to watch and feel them removed. Exciting to lose the tubes and bulbs, but a tiny bit worrisome, too. Where is that 50mL of drainage fluid from the right side going to go now? I am told “the body just absorbs it”. Okey-dokey, doc. Guess I’m just going to have to believe you on that one.

The immediate instructions were for more rest, and no exercise yet. Sure, I can handle that. He did explain why it feels like a TRUCK is parked on my chest though. Apparently, a large section of tissue and skin was removed from the left breast where the tumor was very close to the skin on the upper portion of the breast, plus the nipple and the normal amount of skin below the nipple for the mastectomy. That coupled with the skin removed from the right side, well, it added up to a loss of a lot of skin. So…Dr. Barone just “borrowed” skin from my left side, the area under my arm, disengaged it from the muscles and PULLED IT to the front of the chest area to be able to sew my chest closed. So, there it goes. Take out a couple of breasts, a bunch of skin, and stretch the rest of the skin around the same body. Kind of like a size 10-12 trying to fit into a size 6. I don’t know when I get to feel like the “truck on my chest” has moved on, but I’m pretty sure it is not any time soon. So for now anyways, half a gallon of milk is way too heavy for me to lift, and it is exceedingly painful to lift my elbows above my shoulders. So I try not to do that.

At the end of the appointment Dr. Barone called for his staff to get the pathology report, and he smiled and said, “well, this is about the best news you could get”.

Wow. This was one of the good days. I know that I still have lots of days to get through. Lots of days left of recovery time. Still the question of treatment of radiation and/or chemotherapy (hope for chemo only). Still the work of “reconstruction”. Years of medications to gulp down. And I really am a little afraid to be too positive or hopeful so early on in this strange cancer adventure. Just don’t want to be disappointed again.

But Juli was right, and this was one of the good days I am going to enjoy for a little while, even with a truck parked on my chest.